“I’m going to live my life. Lipedema can come along for the ride.” Stine’s story of self blame, a long road to diagnosis, and the turning point that came with the right support and real understanding.
What you have in Norway sounds absolutely amazing. I’m in Australia. There are very few who recognize it here. Everything I have learned is from my own reading and experimenting on myself to figure out what works. Having real care, support and guidance sounds utterly wonderful 🥹🫶🏼👏🏼
I can’t leave a comment on your latest post so I’ll leave it here- Through every hormonal season, you mention in that Substack that the biomarker explaining why some girls get Lipodema and other do not, is still to be discovered. I encourage you to look at the work of Dr Tara Karnezis and her husband Associate Prof Ramin Shayan out of Australia and the discoveries they have made with regards to discovery of a potential biomarker.
Amazing!! The more clever minds we have working together on deciphering this awful disease the closer we will be to finding a clearer way forward. I feel like a walking experiment, trying to figure things out on my own and some days it’s just all a bit much. My hope is that no young girl should be forced to navigate this on her own in the future… thank you for your amazing work!
For the first 10 years after I learned I had lipedema, I was completely on my own. That was throughout my twenties. I found one celebrity who was open about it, and I even tried to message her on Facebook. She never replied, of course, but I was desperate for support and reliable knowledge.
Eg kjenner meg veldig godt igjen i det Stine beskriver her! ❤️❤️
Eg bur også i Norge, og samme helseregion som Stine. Men er en av 200 kvinner som er med i det nasjonale studiet om kirurgisk behandling av lipødem. Eg veit eg er utruleg heldig. Og eg håper, og trur, at dette studiet vil opne for at fleire får tilbud om dette offentlig! 🍀🍀❤️❤️
What you have in Norway sounds absolutely amazing. I’m in Australia. There are very few who recognize it here. Everything I have learned is from my own reading and experimenting on myself to figure out what works. Having real care, support and guidance sounds utterly wonderful 🥹🫶🏼👏🏼
I can’t leave a comment on your latest post so I’ll leave it here- Through every hormonal season, you mention in that Substack that the biomarker explaining why some girls get Lipodema and other do not, is still to be discovered. I encourage you to look at the work of Dr Tara Karnezis and her husband Associate Prof Ramin Shayan out of Australia and the discoveries they have made with regards to discovery of a potential biomarker.
Wow, thank you! I love to get tips like this. I have looked them up, and I will ask them for an interview.
Amazing!! The more clever minds we have working together on deciphering this awful disease the closer we will be to finding a clearer way forward. I feel like a walking experiment, trying to figure things out on my own and some days it’s just all a bit much. My hope is that no young girl should be forced to navigate this on her own in the future… thank you for your amazing work!
For the first 10 years after I learned I had lipedema, I was completely on my own. That was throughout my twenties. I found one celebrity who was open about it, and I even tried to message her on Facebook. She never replied, of course, but I was desperate for support and reliable knowledge.
Eg kjenner meg veldig godt igjen i det Stine beskriver her! ❤️❤️
Eg bur også i Norge, og samme helseregion som Stine. Men er en av 200 kvinner som er med i det nasjonale studiet om kirurgisk behandling av lipødem. Eg veit eg er utruleg heldig. Og eg håper, og trur, at dette studiet vil opne for at fleire får tilbud om dette offentlig! 🍀🍀❤️❤️
Jeg håper også det! 💛 Vet du når de første artiklene blir publisert? Jeg venter spent 🫣